this post was submitted on 22 Jan 2024
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So they let them die because of science. Those are the real heroes.
While I agree participating research is a wonderful and generous thing for them to do, it'd be very incorrect to say "we let them die because of science." First of all, these are all people who got the standard of care, our currently available known effective treatments. It's not like they had treatments taken away from them. Second, before a study, we don't know if a new treatment idea works, or even if it may end up actually harming people, that's why the study is being done. Most experimental treatments end up being ineffective, and the way you figure that out is by comparing to control groups without the experimental drug. If we did know if an experimental drug was effective there wouldn't be any trials for this on going at all, it'd just be given to patients already and on the market. There are even studies where harms are uncovered and people end up better in the placebo group. And third as someone else has already pointed out, this isn't survival, it's disease free survival, which is different.
Another way researchers deal with this issue, is that many/most large trials now define what are called interim analyses. These are periodic checkpoints done throughout the study where an independent statistical analysis is done of the results so far, and based on certain pre defined criteria, the trials could be stopped early, either because it's clearly helping or clearly not helping, or even harming. Studies are also modeled statistically beforehand, to try and design them (eg how long, how many participants) to demonstrate effectiveness or lack thereof as soon as possible and also minimize potential harm exposures to experimental treatments.
Something to put this brutal-looking number in perspective: those stats are for people who survive and are disease-free. The writer didn't mention the survival rate for people who survive stage 4 and still have it.
It's totally possible to survive stage 4 melanoma, the 5 year survival rate is like 15-20%. Not super high, but not zero either.
Actually this can lead to a stopping of the clinic phase. If some medicine is too good, its unethical to withheld it from the control group, which can lead to an interruption of the study.
I should have put that quote in the post body!